This site is dedicated to the 10 precious young Australians lives that are lost every week in Australia to Sudden Cardiac Death in the Young. We aim to raise awareness and preventative strategies for parents and young people. We will also call into question why the Federal Government is totally silent, although aware that over 500 hundred young people die each year from this sudden, tragic event in the apparently fit, young and healthy.

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Friday, March 11, 2011

Read what the Hon Nicola Roxon and her top "Medical Advisor’s" from the Department and Health and Ageing have to say about Sudden Cardiac Death in Young People.

Now look at the Cry UK Website (Cardiac Risk in the Young) and see what the right medical advice and political will can achieve.

Consider just one transcript from the Parliamentary Hansards Debate in the UK to see how seriously they take the loss of young lives from Sudden Cardiac Death in Young People and compare their response to that of our Government.

Incredibly the loss of young lives in the UK is on par with those lost in Australia. However the UK like other non - third world countries have recognised the preventable, tragic loss of life in our young for the last 15 – 20 years.

Senator SIEWERT-I wanted to ask you about sudden cardiac arrest in young people. I have had correspondence about it and I have also seen some issues about it. There has been a bit of attention given to the issue. I am wondering: is it an issue that the department is aware of? Have you been looking at any statistics on it?

Ms Halton-We have our own expert. He can start.

Prof. Bishop-I am not an expert. The important thing about screening relates to whether in fact this can be screened for. It can be difficult. There is a methodology in relation to screening that has got to show that by introducing something you can show an overall reduction in mortality. It has to be of a sufficient amount to essentially justify a larger program. That is a basis on which screening things are set up. They are set up specifically on the basis of being able to show mortality reduction at a population level. While I think we all understand the individual case, I think screening is quite a different methodology. Dr Singer may like to take this a little bit further.

Dr Singer-Thank you. I do not know whether the Chief Medical Officer knows more than I do, but I am not aware of a particular screening test for this condition. There certainly are a number of tests I would regard as potential candidates. They would not be economically viable for this kind of thing over a population level.They are fairly extensive tests that would need to be done.

Senator SIEWERT-In terms of the potential screen techniques, do you say that they are expensive or do you not think there is actually a screening technique?

Dr Singer-I am not aware of a screening technique that is available for this condition, but as I said there are a couple of potential candidate screening tests. They are not really screening tests; they are diagnostic tests and they are not cost-effective in this setting.

Senator SIEWERT-I have seen wildly varying differences on how many people could potentially be affected and how many people have died as a result of this. Has the department looked at how many people have been affected by this?

Dr Singer-Not to my knowledge.

Senator SIEWERT-How do you know it would not be cost-effective if you do not know how many people have died as a result of this? I am not trying to be smart; I am just—

Dr Singer-I understand. My understanding is that this is a relatively rare condition.

Senator SIEWERT-Okay. What counts as ‘relatively rare’?

Dr Singer-I am not in a position to give you an exact figure, I am afraid.

Senator SIEWERT-Okay.

Dr Singer-But certainly this is one where the other problem with it is that it is not a single pathological condition. It is more a syndrome in that it is something that happens, but there are a number of potential causes for it. So, as a result, usually the only way that you can identify the problem is to actually show an abnormality in the cardiac rhythm and that, I would expect, would require something like an electrophysiological study, which is a fairly invasive study and certainly is not a candidate for population screening. Simpler tests that might be a candidate, such as, for example, an electrocardiogram, do not identify cases with any reliable sensitivity. That is the main issue.

Senator SIEWERT-It seems to be the cases that you hear reported are associated a lot with young athletes.

Dr Singer-That is true, yes.

Senator SIEWERT-Is there a potential role for awareness raising or highlighting this for young athletes.Because I do not know much about it—you said there are a number of causes—I do not know if that is going to work anyway or if there is anything you could do about it.

Dr Singer-There certainly has been a reasonable amount of attention paid to this in the international literature, particularly in the US where it has been a fairly popular—that is not the right word—issue where some attention has been paid, and certainly some of the American based medical journals that I read, such as the New England Journal of Medicine and Annals of Emergency Medicine, certainly have highlighted cases where this has been an issue. Yes, I guess there is potentially the opportunity for raising awareness amongst health practitioners in this, but certainly anyone who reads the literature would be aware, anyway.

Senator SIEWERT-Thank you.

RESPONSE
Perhaps someone could send the Doctors' this simple Blog - it may assist in providing them with a bit more information than they currently have, such as the following from the CRY - UK Website.

The ECG test when used in isolation is not as comprehensive as when used with the Echo, but it will detect the majority of abnormalities. This includes 97% of those young people who might be at risk of Hypertrophic Cardiomyopathy, which is the most common cause of Sudden Death Syndrome in the UK. Recent research has shown that 1 in 500 people have Hypertrophic Cardiomyopathy. The ECG test is also the definitive test for Wolfe-Parkinson-White (WPW)and Long QT Syndrome. The ECG test will not pick up Coronary Artery Anomalies or Coronary Artery Disease.

Perhaps they can also refer to their own Department's website regarding the prevalence of Hypertrophic Cardiomyopathy which is described as not rare and this condition alone affects 1:500 - refer to Sports Section.

There should also be some information available to them, since according to Nicola Roxon the Government has spent $24 million dollars since 2000 into better understanding and addressing SCD.

Sunday, February 20, 2011

Ms Roxon was provided with most of the information provided on this site including the tragic details of the SCD of a teenager who died after a sporting event. A tragedy that occurs to 12 Australian families each week. Over 500 young Australians each year, yet there is a total lack of preventative strategies and basic awareness to protect our youth who are at risk. Ms Roxon is fully aware of the prevalence of SCD.

Perhaps Ms Roxon should see the horrendous tragedy of SCD – a scene that is played out in our schools and sporting fields. Scenes that will never be erased from those that witness the reality of SCD in a young person. WARNING – those that have experienced this tragedy should not view this.

The Australian Government provides assistance for pathology services, medical procedures and technologies through the Medicare Benefits Scheme (MBS). The MBS funds a range of tests that might be used by clinicians who suspect that a patient or the relative of a patient has a cardiac disorder. These include echocardiograms, cardio echo and angiography.

Response• Ms Roxon has chosen to ignore the fact the SCD affects the young, fit and healthy, in particular those reaching puberty to mid twenties and of course young athletes. So if there is no awareness about SCD and cardiac risk in our youth who would think to have the above tests undertaken?

• Symptoms can be absent altogether, mild and often mistaken by GPs for other things – the many young ones who die suddenly are a testament to this. GPs are ill informed and parents will miss the signs, if any because the young people look so well and usually perform at a high level.

• It is only the few that present with significant and obvious signs who will be identified by GPs and benefit from the MBS tests – hence the term “Sudden” because the death comes without warning”.

2. Ms Roxon:

The Medical Services Advisory Committee (MSAC) provides comprehensive, high quality advice to the Australian Government on whether new and existing tests and procedures warrant funding through listing on the MBS. The MASC has recently agreed to evaluate for public funding genetic tests for Long QT syndrome, which is one of the causes of Sudden Cardiac Death in Young people.

Response• How does the MSAC agreeing to “evaluate” genetic tests for just one of the conditions that causes SCD in young people constitute an awareness and preventative strategy to stop young people from dying now.

• The availability of this genetic testing, if it actually eventuates will be for the benefit of family members that have already lost someone to Long QT or who have been diagnosed with Long QT. It SHOULD be funded. Along with genetic testing for all of the genetic cardiac disorders, particularly HCM which is the most prevalent.

• But this is not a preventative initiative nor will it be available for the broader community i.e. those at risk now and the Minister knows this.

3. Ms Roxon :

Unfortunately, specific funding is not available for a national screening and prevention program. The Government receives numerous requests for funding and increased action in relation to many conditions and programs however it is not possible to meet all of these requests.

Repsonse:
• A number of proposals were suggested for Ms Roxon’s consideration the very least of which was that parents and young people be provided with information in relation to SCD so that informed decisions can be made by parents and young people.

• I’m sure Ms Roxon receives many requests but how many does she receive that states that over 500 hundred young people ( backed up by Federal Government Funding research) will die suddenly, no second chance and no opportunity for treatment or a chance of survival.

• Ms Roxon chose to be a Member of Parliament, accepted the portfolio as Minister for Health, and accepts her position in society and the many benefits that come with it so she should also accept the challenges of her position and her responsibility to young Australians.

• SCD in young people is not a new phenomenon research has been going on across the world for 40 years. At what point will the Government share their awareness with ordinary Australians, clearly the 500 certain deaths a year is not considered important enough to warrant action by the Department of Health. Perhaps she should talk to some affected families.

• The Government continues to commit funding to yet more and more awareness programs for cardiac risks which relate to older people and lifestyle factors: obesity, smoking, ect yet is dismissive about our active youth who are dying now.

• The sad reality is, when a young person dies suddenly there is no cost incurred by the Government. This is obviously a consideration for the Government when choosing to be inactive about awareness. But the cost to young ones that lose their lives to SCD, their family and our society is immeasurable.

4. Ms Roxon :

The Government recognises the importance of research, and has allocated more than $24 million for cardiac arrhythmia since 2000, through the National Health and Medical Research Council. Research efforts in this area are a valuable first step in better understanding and addressing SCD.

Response
• Research has been going on in Australia about a known problem for 11 years and has received $25 million dollars in funding from the Federal Government. Ms Roxon describes this as a valuable first step. During this first step over 5000 young people have died. How long will it take the Federal Government to get to the second step of a simple awareness campaign.

• It is shocking that the Government has been funding research for 10 years, during which time the researchers must be putting up a very good case for funding which of course is the high prevalence of young people dying suddenly. Yet no resources have been put into an awareness program of any kind to prevent the loss of young lives now.

• SCD in Young People is not new – hence the programs that are already in place throughout the world to address this tragedy.

• Ms Roxon’s reliance on research in the absence of any awareness strategies, would be like researching the genetics of breast cancer without providing any warning signs or treatment!

Labor’s new spokesperson on health has personal reasons for believing prevention is better than cure. Following a tragic personal experience Ms Roxon went on to say – The experience helped form a commitment to preventing or minimizing catastrophic health events through health promotion, prevention and medical research. .

It also drove home to me how much an event like that affects all other aspects of the persons and their family life. We must ensure our systems works well to assist those who are unlucky enough to have a major and unexpected health incident that can turn their life on its head.

Ms Roxon further goes on to say – The passion for health prevention has also been driven by the arrival of her daughter. Contact with mothers has made her aware of how hard it can be for parents to access medical advice unless there is a specific problem, given the shortage of GPs.